Hi there, I was diagnosed with Chronic myeloid leukaemia last week which was a huge shock but at the same Imatinib time a relief to receive an explanation as to why I was fatigued and generally feeling off. I’m 55, divorced with a teenage daughter in her GCSE year. I’m worried about the effect it will have on her and my ability to work and pay the mortgage. I don’t receive financial support, I’ve been signed off work for 6 weeks so at least have that space. I’ve just started taking Imatinib. Any words of experience and wisdom will be much appreciated. Thanks.
Hi @Noggins123 firstly I’m so sorry to read about your new diagnosis, it’s a total shock to the system. I’m glad to read that you’ve been signed off initially for 6 weeks which will give you a little breathing space. In terms of employment there cannot be any discrimination against your condition as per the Equality Act but that’s about as far as my knowledge goes, I will copy in @BloodCancerUK-SupportTeam as I’m sure someone else will be able to advise further. In the meantime take great care of yourself and be selfish if you need to. Please keep us updated with any news, thanks Sue
A great big welcome @Noggins123 and I am so glad that you have found us and you are now part of our forum family.
As you say it was a huge shock and perhaps you might still be in shock I know I was when I was newly diagnosed.
My thoughts and emotions went into complete overdrive.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago at the age of 53.
I expect your daughter might guess that something is up, and it is personal choice, but I think she would prefer to hear from you now.
Yes, it will be a shock, but it will give her time to get over the shock before her exams.
You might talk to her about telling her school together.
Personally I would say to her to ask whatever is on her mind at any time.
Do you have contact details of a clinical nurse as they are there for all your questions and practicalities.
Perhaps write down all your fears and questions for your next medical appointment and be pleasantly assertive till you get the answers you need.
I attach 3 links that may be useful to you.
Chronic myeloid leukaemia (CML) | Blood Cancer UK
Blood cancer and fatigue | Blood Cancer UK
Blood cancer: money and work | Blood Cancer UK
The Blood Cancer UK support line is there for you on 0808 2080 888
I hope others can share their experiences for you.
Please do really look after and be very kind to yourself and keep posting how you are doing.
Hi @Noggins123 and welcome to the forum.
I can see @Erica and @Suenew1967 have already given great advice and links to support you.
It’s often a relief to know what is causing your symptoms but that doesn’t stop the impact of the diagnosis and the range of emotions it brings.
I empathise so much with the worries about your daughter. My oldest was a teenager when I was diagnosed and I found it really tough. However, I found being honest and open and making sure the school was aware was so important. Although it was so hard telling them, they have always said it was better that they knew.
Sending lots of love X
Hello all , I was diagnosed with Chronic myeloid leukaemia 3 weeks ago! I have been on Imatinib, I see my consultant today and more blood tests. My white cells are good, but my platelets are still high he has put me back on hydroxycarbamide for 2 weeks to see if that brings it down. I will have a blood test every week till I see my consultant in three weeks time. I was really hoping for good news today
A great big welcome @Curtis498 gosh things are really moving quickly for you and personally I was still in shock for a long time after my diagnosis.
Perhaps give yourself time to come to terms with it all.
The Blood Cancer UK support line is there for you (opening hours apply) on 0808 2080 888 and we will be about over the holidays.
Do you have any support?
Please do keep posting as I look forward to hearing more about you.
Look after and be very kind to yourself.
It’s been like a whirlwind and I don’t think I’ve truly got my head around it all yet, really pleased my white blood cells are back to normal now - they were 158 i don’t know if that’s really high or just a bit high. Hopefully my platelets will start behaving very soon too.
I do have good family and friends support hopefully it will settle down soon
Hi @Curtis498 I think it took a really long time for me to get my head round it all.
I am really glad that you have good support from family and friends, I think it really helps.
Be very kind and look after yourselves and please do keep posting
Hi @Curtis498 - welcome to the forum - you’ve come to the right place. I’m sorry to hear about your diagnosis - I understand how shocking it is. I was diagnosed with chronic myeloid leukaemia almost 12 years ago, but remember how overwhelming I found it all when I first found out. It took me some time to get my head around it all so be kind to yourself and allow yourself to feel all the different emotions and ask all the questions. It is a difficult time, please do take care & keep talking to us here
Hi @Noggins123 sorry to hear about your diagnosis. Any diagnosis of a blood cancer comes as shock and the fear of not being able to pay your mortgage just adds to that. I have been through Acute myeloid leukaemia (AML) myself and I am now a qualified Mortgage Broker. I don’t know your circumstances regarding sick pay from work but I’m guessing you don’t have any protection insurance either hence the reason you are thinking about paying your mortgage. The advice I would give you is speak to your mortgage lender before your situation gets to the point that you are unable to pay your mortgage. The lender may be able to offer you payment holidays, change your mortgage to interest only or even extend the term to reduce your payments. All of these could help in the short term but the lender will still need paying back in the future. If you leave it too late the situation will get more out of control, which could lead to further issues down the road and more stress and anxiety for you. Wishing you all the best.